Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities-focused research.

Frontotemporal dementia (FTD) is one of the leading causes of dementia before age 65 and often manifests as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). FTD's exact clinical presentation varies by culture, language, education, social norms, and other socioeconomic factors; current research and clinical practice, however, is mainly based on studies conducted in North America and Western Europe. Changes in diagnostic criteria and procedures as well as new or adapted cognitive tests are likely needed to take into consideration global diversity. This perspective paper by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment examines how increasing global diversity impacts the clinical presentation, screening, assessment, and diagnosis of FTD and its treatment and care. It subsequently provides recommendations to address immediate needs to advance global FTD research and clinical practice.

A Process Evaluation of Developing Older Adult Research Advisory Boards in Long-term Care Settings.

BACKGROUND: Enhancing the capacity of researchers, providers and older adults to collaborate in research is critical for promoting relevant, useful research findings. OBJECTIVES: The Sages in Every Setting project aimed to disseminate a flexible model for developing research advisory boards (RABs) comprised of older adults receiving long-term services and supports (LTSS) via partnerships between academic researchers and LTSS providers. METHODS: Process evaluation assessed the feasibility of using resources to develop RABs. Partners sought regular feedback from facilitators and RAB members, which was shared with the evaluator. The evaluator conducted regular debriefings with academic partners and observed some RAB meetings. LESSONS LEARNED: The development of RABs was impacted by pre-existing collaborations, characteristics of providers, flexible use of the resources, facilitator capacity, member capacity, and researcher capacity. CONCLUSIONS: Developing RABs was feasible. Long-term partnerships between research institutions and LTSS providers that serve diverse populations could improve successful dissemination of this model.

Stressors and Acceptability of Services Among Black Caregivers of Persons With Memory Problems.

The purpose of the current study was to identify stressors of Black family caregivers (FCGs) of persons with memory problems (PWMPs), services of interest, and barriers to use of these services. Black FCGs were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and affiliated geriatric clinics, media sources, and word-of-mouth referrals. Of 38 Black FCGs interviewed, 26 (68%) were female, 18 (47%) were employed, and 21 (55%) were adult children. Average age of FCGs was 52.11 years. Mean scores for the AD8 Dementia Screening Scale (mean = 13.95, SD = 2.17) and Clinical Dementia Scale Sum of Boxes (mean = 7.29, SD = 0.87) were higher than clinical cutoffs. The most common stressors for Black FCGs were PWMPs' inability to remember who they were, managing care recipients' financial affairs, and managing PWMPs' comorbid conditions. FCGs were most interested in educational material regarding treatment and diagnosis (55.3%), caring for people with dementia (52.6%), understanding dementia (52.6%), and financial/legal services (52.6%). FCGs stated that transportation difficulties and the need for a relief person were barriers to use of services. Results suggest that Black FCGs may be more likely to participate in interventions that include virtual conferencing modalities. [Journal of Gerontological Nursing, 48(6), 13-18.].

Communication Bridge™-2 (CB2): an NIH Stage 2 randomized control trial of a speech-language intervention for communication impairments in individuals with mild to moderate primary progressive aphasia.

BACKGROUND: Primary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in language (speaking, reading, writing, and understanding) are the primary and persistent symptoms. These impairments progress insidiously and devastate communication confidence, participation, and quality of life for persons living with PPA. Currently, there are no effective disease modifying treatments for PPA. Speech-language interventions hold promise for mitigating communication challenges and language symptoms. However, evidence regarding their efficacy in PPA is of low quality and there are currently no rigorous randomized trials. METHOD: Communication Bridge™-2 (CB2) is a Stage 2, superiority, single-blind, randomized, parallel group, active-control, behavioral clinical trial delivered virtually within a telehealth service delivery model to individuals with PPA. Ninety carefully characterized participants with clinically confirmed PPA will be randomized to one of two speech-language intervention arms: (1) Communication Bridge™ a dyadic intervention based in communication participation therapy models that incorporates salient training stimuli or (2) the control intervention a non-dyadic intervention based in impairment therapy models addressing word retrieval and language production that incorporates fixed stimuli. The superiority of Communication Bridge™ over the Control arm will be evaluated using primary outcomes of communication confidence and participation. Other outcomes include accuracy for trained words and scripts. Participants complete two therapy blocks over a 12-month period. Outcomes will be measured at baseline, at each therapy block, and at 12 months post enrollment. DISCUSSION: The CB2 trial will supply Level 2 evidence regarding the efficacy of the Communication Bridge™ intervention delivered in a telehealth service delivery model for individuals with mild to moderate PPA. An important by-product of the CB2 trial is that these data can be used to evaluate the efficacy of speech-language interventions delivered in both trial arms for persons with PPA. The impact of these data should not be overlooked as they will yield important insights examining why interventions work and for whom, which will advance effectiveness trials for speech-language interventions in PPA. TRIAL REGISTRATION: ClinicalTrials.gov NCT03371706 . Registered prospectively on December 13, 2017.

Results of a Randomized Trial Testing the Efficacy of Tele-Savvy, an Online Synchronous/Asynchronous Psychoeducation Program for Family Caregivers of Persons Living with Dementia.

BACKGROUND AND OBJECTIVES: Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving. RESEARCH DESIGN AND METHODS: A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in 7 weekly synchronous sessions accompanied by 36 brief asynchronous video lessons. We enrolled 23 cohorts of 15 eligible caregivers (N = 261), randomized 2:2:1 to active, attention control, and usual care arms. We assessed caregiver psychological well-being and caregiving mastery at baseline and 3, 6, 9, and 12 months. Multilevel linear models assessed outcomes over the 3 time points examined. The trial was slightly truncated, with Data and Safety Monitoring Board approval, because of the apparent confounding psychological effects of coronavirus disease 2019 restrictions. RESULTS: Study findings indicate statistically and clinically significant benefits to Tele-Savvy arm caregivers (with moderate to large effect sizes) in the areas of depression, perceived stress, reaction to care recipients' behaviors, and enhancement of caregiver mastery. Expected benefits for caregiver burden and anxiety were not found. DISCUSSION AND IMPLICATIONS: Findings attest to program efficacy and the viability of employing distance means to improve family caregivers' emotional well-being and sense of mastery in the caregiving role over a 6-month period. Next steps entail finding alternate ways to deliver the program to those with connectivity and/or time constraint problems.

Can Persons with Dementia Meaningfully Participate in Advance Care Planning Discussions? A Mixed-Methods Study of SPIRIT.

Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare. Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP. Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient-surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home). Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently). Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre-post. Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.

Development of a Psycho-Educational Support Program for Individuals with Primary Progressive Aphasia and their Care-Partners.

Primary progressive aphasia is a language-based dementia that initially spares other cognitive domains; however, aphasia interferes with many life roles such as work and interpersonal relationships. Psycho-educational programs, such as support groups have been shown to be effective for persons with Alzheimer's dementia; however, little is known regarding their effectiveness for persons with primary progressive aphasia. This paper describes the development of a program that offers support, education and activities for persons with primary progressive aphasia and their care-partners and its feasibility. Development and structure of pilot and formal intervention groups are described. Thematic analysis of both groups included the following themes: (1) coping with limitations and language decline; (2) dealing with increased dependency; (3) expressing resilience and making adaptations; (4) experiencing stigma (pilot group) and confronting stigma (intervention group); (5) experiencing self-confidence; and (6) feeling a sense of belonging. The knowledge gained from this process may be useful in designing programs for individuals with aphasic dementia and preserved insight. Evidence-based data from supportive interventions for persons with primary progressive aphasia and their care-partners are needed.

SPIRIT advance care planning intervention in early stage dementias: An NIH stage I behavioral intervention development trial.

People in the early stages of Alzheimer's disease and related dementias (ADRD) are encouraged to engage in advance care planning (ACP) while they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate. In this NIH Stage I behavioral intervention development trial, we will adapt and test an efficacious ACP intervention, SPIRIT (Sharing Patient's Illness Representation to Increase Trust), with people with mild dementia and their surrogates to promote open, honest discussions while such discussions about end-of-life care are possible. We will first adapt SPIRIT (in person) to target people with mild dementia and their surrogates through a process of modification-pretesting-refinement using stakeholders (persons with mild dementia, family caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based videoconference format (SPIRIT-remote). Then in a 3-group RCT with 120 patient-surrogate dyads, we will evaluate the feasibility and acceptability of SPIRIT in-person and SPIRIT remote, and preliminary efficacy of SPIRIT compared to usual care on preparedness outcomes for end-of-life decision making (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) shortly after the intervention. This Stage I research of SPIRIT will generate valuable insights regarding how to improve ACP for people with mild dementia who will progress to an advanced stage of the disease in the foreseeable future. TRIAL REGISTRATION: ClinicalTrials.gov NCT03311711, Registered 10/12/2017.

Testing Tele-Savvy: Protocol for a randomized controlled trial.

Many informal caregivers of persons with dementia suffer adverse health consequences. Although established psychoeducation programs are known to benefit caregivers, attending in-person programs is challenging for them. To address this challenge, the Savvy Caregiver Program, an evidence-based psychoeducation program with demonstrated effectiveness for caregiving and disease-related outcomes, was transformed into an on-line program, Tele-Savvy. This article describes the rationale for and design of a prospective longitudinal randomized controlled trial (targeted N = 215), currently underway. The trial aims to establish Tele-Savvy's efficacy in (i) reducing the negative effects of caregiving on caregivers; (ii) promoting care recipients' quality of life; (iii) improving caregiver mastery; and to explore (iv) Tele-Savvy's efficacy among caregivers of different races/ethnicities. The mediating role of mastery will be assessed. Participants are randomized to the active condition (immediate Tele-Savvy participation), attention control, or usual care. Participants in the two latter conditions will complete Tele-Savvy 6 months post-baseline. Multilevel mixed effects models will be used to examine changes in outcomes and to model group by time (months since baseline) interactions. The exploratory aim will be addressed using analysis of covariance and qualitative analysis. This trial's results may be used by healthcare and community organizations to implement Tele-Savvy in dementia care, increasing caregivers' access to this evidence-based intervention.

The Memory Ensemble: improvising connections among performance, disability, and ageing.

There is a recognised need for research that illuminates mutually beneficial connections among performance, ageing, disability theory, and praxis. One such project is the Memory Ensemble™ , an improvisational theatre intervention for persons with early stage Alzheimer's disease and related dementias (ADRD). This case study explores how the programme productively disrupts and expands notions of all three: performance, disability, and ageing. The mission of the Memory Ensemble is to improve the quality of life for persons living with ADRD through the intervention of improvisational performance; to investigate the benefits of this non-pharmacological intervention; and to translate these benefits to other communities.

Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups.

INTRODUCTION: Racial and ethnic groups are under-represented among research subjects who assent to brain donation in Alzheimer disease research studies. There has been little research on this important topic. Although there are some studies that have investigated the barriers to brain donation among African American study volunteers, there is no known research on the factors that influence whether or not Asians or Latinos are willing to donate their brains for research. METHODS: African American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation. RESULTS: Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure that their brain will be donated. Negative predictors included African/African American race, belief that the body should remain whole at burial, and concern that researchers might not be respectful of the body during autopsy. DISCUSSION: The predictive factors identified in this study may be useful for researchers seeking to increase participation of diverse ethnic groups in brain donation.

The CARE pathway model for dementia: psychosocial and rehabilitative strategies for care in young-onset dementias.

The goal of the Care Pathway Model for Dementia (CARE-D) is to improve quality of life and daily functioning both for individuals diagnosed with dementia and for their families or other caregivers. This is accomplished by developing individualized recommendations focused on a person's strengths and weaknesses as determined by formal neurocognitive and psychosocial evaluations. Careful attention is given to the stage of illness and an individual's stage in life, to connecting families with services that target an individual's cognitive and behavioral symptoms, and to providing education and emotional support specific to symptoms, clinical diagnosis, and prognosis.

Benefits of mindfulness training for patients with progressive cognitive decline and their caregivers.

New strategies are needed to help people cope with the repercussions of neurodegenerative disorders such as Alzheimer's disease. Patients and caregivers face different challenges, but here we investigated an intervention tailored for this combined population. The program focused on training skills such as attending to the present moment nonjudgmentally, which may help reduce maladaptive emotional responses. Patients participated together with caregivers in weekly group sessions over 8 weeks. An assessment battery was individually administered before and after the program. Pre-post analyses revealed several benefits, including increased quality-of-life ratings, fewer depressive symptoms, and better subjective sleep quality. In addition, participants indicated that they were grateful for the opportunity to learn to apply mindfulness skills and that they would recommend the program to others. In conclusion, mindfulness training can be beneficial for patients and their caregivers, it can be delivered at low cost to combined groups, and it is worthy of further investigation.

"I know what CBPR is, now what do i do?": Community perspectives on CBPR capacity building.

BACKGROUND: Community-based participatory research (CBPR) offers a promising approach for combating health disparities. CBPR capacity must be developed among academics and communities. Most published CBPR capacity development work focuses on general guidance or individual partnership development. OBJECTIVES: Herein we have reported community perspectives on community capacity-building efforts involving multiple community partners, including capacity-building outcomes and identification of facilitators and challenges. METHODS: We have presented a case study using qualitative and quantitative data from community-based organization (CBO) members of a committee guiding a university-based CBPR initiative. A survey measuring 11 CBPR capacity domains was fielded at two points. Three rounds of interviews were conducted. RESULTS: Community CBPR capacity increased over time, although there remains room for improvement. Leader commitment, CBPR resources, and hands-on CBPR experiences were identified as key facilitators. Resource limitations, difficulty integrating CBPR into organizational operations, lack of specific information, and institutional inequities were identified as challenges. Recommendations offered include continued and expanded support for sharing/co-learning with academic partners and capacity-building activities and services. CONCLUSIONS: Results will inform future efforts and contribute to the understanding of capacity-building outcomes for initiatives supporting multiple CBPR partnerships.

Caring for children of parents with frontotemporal degeneration: a report of the AFTD Task Force on Families With Children.

The Association for Frontotemporal Degeneration (AFTD) organized a 7-person Task Force on Families With Children to explore the concerns of families when a parent of young children or teens is diagnosed with FTD. This report summarizes the findings of the task force and highlights the need for additional attention to this topic. The task force conducted a review of related literature and existing resources and compiled issues identified by spouses/partners, teens, and adult children within an affected family. The project confirmed a significant lack of information and support for parents caring for a spouse with FTD and for their children. Recommendations include developing resources and strategies that promote comprehensive family support, including those that build resiliency in the well parent and the children, and strengthen the changing family unit. Avenues for additional research in this area of need in the FTD community are suggested.

Medical student education program in Alzheimer's disease: the PAIRS Program.

BACKGROUND: As life expectancy increases, dementia incidence will also increase, creating a greater need for physicians well-trained to provide integrated geriatric care. However, research suggests medical students have limited knowledge or interest in pursuing geriatric or dementia care. The purpose of this study is to evaluate the PAIRS Program and its effectiveness in enhancing medical education as a service-learning activity and replication model for the Buddy ProgramTM. METHODS: Between 2007 and 2011, four consecutive classes of first year Boston University School of Medicine students (n = 45; 24 ± 3 years, 58% female, 53% White) participated in a year-long program in which they were paired with a patient with early-stage Alzheimer's disease (AD). Assessments included pre- and post-program dementia knowledge tests and a post-program reflective essay. RESULTS: Program completion was 100% (n = 45). A paired-sample t-test revealed a modest improvement in dementia knowledge post-program (p < 0.001). Using qualitative coding methods, 12 overarching themes emerged from the students' reflective essays, such as observing care partner burden, reporting a human side to AD, reporting experiences from the program that will impact future clinical practice, and obtaining a greater understanding of AD. CONCLUSIONS: Quantitative and qualitative findings suggest that the PAIRS Program can enhance the acquisition of knowledge, skills, and positive attitudes regarding geriatric healthcare in future generations of physicians, a skill set that is becoming increasingly relevant in light of the rapidly aging population. Furthermore, results suggest that The Buddy ProgramTM model can be successfully replicated.

Accessing community-based and long-term care services: challenges facing persons with frontotemporal dementia and their families.

There are several barriers to accessing services for persons with frontotemporal dementia (FTD), and few studies have examined service needs and satisfaction with services for family caregivers of persons with FTD. Persons with FTD and their families have reported consistent difficulties in their attempts to access care and support. These are: (1) difficulty obtaining a diagnosis; (2) financial concerns due to loss of employment, job-related income; (3) problems accessing social security disability insurance; and (4) lack of adequate community-based and long-term care services and resources. Successful care practices such as use of an interdisciplinary team and helpful care models such as person-centered care and the antecedent-behavior-consequence method are described. Further investigation and research are needed to understand best care strategies for persons with FTD.

Seeking a diagnosis for memory problems: the experiences of caregivers and families in 5 limited English proficiency communities.

Limited data exist on how members of different cultures understand dementia. The Northwestern Cognitive Neurology and Alzheimer's Disease Center in collaboration with Coalition of Limited English Speaking Elderly and Alzheimer's Association-Greater Illinois Chapter collaborated to raise awareness in 5 limited English proficiency (LEP) communities (Assyrian, Arabic, Bosnian, Hindi, and Urdu) during 2005 to 2008 through a grant from the Administration on Aging Alzheimer's Disease Demonstration Grants to States. After the second year of the program, 267 individuals with cognitive impairment were identified with cognitive impairment and enrolled; however, only 13% of those sought a medical evaluation to obtain a diagnosis or further help for their memory problems. This project sought to: (1) understand how these LEP community groups conceptualize dementia and (2) understand reasons LEP communities sought or did not seek a diagnosis. Using a community-based participatory research approach, ethnic community leaders conducted 48 interviews in a convenience sample of persons enrolled in the previous Administration on Aging demonstration grant. These interviews were conducted with family members of identified persons with dementia in their native language. Interview notes were translated and subjected to thematic analysis. The majority view memory loss as explainable and normative--due to aging, reaction to medication or trauma experienced by war, family problems, or the immigration experience. This conceptualization and the perception that a doctor cannot help influenced whether they sought an evaluation. Those who saw a doctor were looking for medical treatment and help with difficult behaviors. Experience in the doctor's office was variable. Discussion of analysis with ethnic communities revealed the significance of stigma in the data gathering. Continued community-based participatory research approaches with LEP communities could further highlight needs for culturally relevant education and intervention.

Organizing a Series of Education and Support Conferences for Caregivers of Individuals With Frontotemporal Dementia and Primary Progressive Aphasia.

Frontotemporal dementia and primary progressive aphasia are relatively rare dementias, with average age of onset in the 40s to 60s, and cause initial degeneration in behavior and language, respectively. Caregivers of diagnosed individuals report that there is little information available about these diseases. In response to this need, we designed and implemented a 3-part series of conferences aimed to educate and provide support to these caregivers. This article introduces the reader to the 2 disorders, highlights the need for specialized resources, and describes the execution of the conferences. The need for similar resources to be offered in other regions is discussed.